For women with Cerebral Palsy, self-advocacy is probably the most important part, but it's also probably the hardest part because most of those doctors have not encountered women with disabilities. You really have to tell them what you need and tell them what to expect.
When scheduling and preparing for an OB/GYN appointment, women with Cerebral Palsy have additional challenges to consider and address when both scheduling the appointment and once they go their appointment.
For women with Cerebral Palsy, finding a new OB/GYN can be difficult for a variety of reasons: accessibility (both to the building and in the exam rooms), staffing and supports for additional physical needs and more.
When you use alternate means of communication it can be really frustrating to go out in community. It is hard to know whether people are understanding you and whether they will take the time to listen. A lot of times it's hard for people to admit that they're not always comfortable with a device or a wheelchair or person who does things differently. So the more we can expose and educate people the better off we all will be. When we talk about acceptance, we're not just talking about people in society accepting people with disabilities. We're also talking about people with disabilities who are using alternate means of communication and how difficult it is for them to be out in the community.
5 things for women with Cerebral Palsy to consider when preparing for their OB/GYN appointment
Weight, height and body composition are important indicators for development. The tools used to measure these can be different for children with cerebral palsy.
Children with cerebral palsy (CP) often grow poorly and assessment of growth in this population is further complicated by two main difficulties. Firstly, children may have joint contractures, muscular weakness, scoliosis, and/or involuntary movements that make standing or lying straight difficult, if not impossible.
Cerebral palsy is an injury to the brain, but what we find is that it has a lot of effects on how you use your muscles.
For people with a physical disability, activity is a lifestyle. It's something that can start in physical therapy, but it really is something that has to be carried over into their everyday lives. What has happened over the years is we're understanding the importance of mobility.
Cerebral Palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. Depending on the part of the brain that is injured depends on how someone’s muscle tone will be effected. For people with spastic CP they have increased muscle tone because of the part of the brain that's injured. If causes very tight muscles which in turn effects the movement of the joints and of the limbs. For others who have dyskinetic CP they lose the ability to have voluntary control over their muscles, and they can have jerky and uncontrolled movement patterns.
Early interventions for CP should be based on the strongest possible scientific evidence for benefit and should have the smallest possible risk of harm. In the US, early intervention (EI) is a system of services available under the age of 3, to support infants and toddlers with developmental problems and their families as they interact with and care for their child.